The Challenge.

The Partnership.

The Commitment.

A Support Group’s True Stories

“I’m Peeing As Fast As I Can,” is the output of learning exchanges with the members of the Citrus Valley Interstitial Cystitis Support Group that began meeting in 2000. The medical label of “Interstitial Cystitis” has been expanded to include the explanatory label “Bladder Pain Syndrome” (BPS/IC), meaning it includes pelvic pain of bladder origin; this description strengthens the understanding and the reality of the impact of BPS/IC has on the human body.

This BPS/IC recovery guide shares the thoughts and course of actions that are time tested by our support group’s experience through trials, errors, and successes. Over these years through our meetings, phone calls, and email contacts we have shared information, solved dilemmas, been perplexed, gained insights, stumbled on to answers or found comfort in person to person support and advocacy for BPS/IC.

Our purpose in writing this recovery guide is to make it your resource that recognizes your ability to work with the challenge of BPS/IC and learn the techniques to bring balance back into our life. This guide is our best effort to address what we have recognized as the reoccurring themes in our individual IC discovery and recovery trail.

A Personal Story from “I’m Peeing As Fast As I Can”

Joan, age 52 – BPS/IC: All in the Family

Background

My Name is Joan, and I am 52 years old. My husband and I have jointly lived one hundred and nine years with our five children. They range in age from twenty-seven to thirteen.

I begin my story with the introduction of my children because as their Mom, I continued to make multiple bathroom visits just as I had needed to do during my growing up years. My dad and Mom made family vacation car trips an adventure of frequent restroom stops for me. For two of my five children, I followed my childhood pattern of planning any away from home outing armed with the knowledge that there would be multiple pee stops. I truly believed that my other three children had the urinary problems because they never seemed to need to go. But as it was discovered my eldest and youngest share my IC diagnosis.

In my teenage and young adult years I often had sharp pelvic pain and from time to time the pelvic misery was a dull thudding pain sensation. It made sense to me then that the problem was my uterus. I never thought about the bladder or the urethra as source.

With my marriage came the realization that sexual intercourse was painful. The search for a cause led me to ten gynecologists. I was diagnosed with Pelvic Inflammatory Disease (PID) and the resolution was supposed to be found in lots of Ibuprofen (Motrin) and hot baths. For me, this management helped. What added to my confusion was that when the pelvic pain was bad and I felt it would never end, it would suddenly subside. Years would go by before I made connections to my pelvic pain increasing before my period; all I knew was that the pain cycle went on and on. This was my life, I made the most and best of it.

Then came the physicians who thought that perhaps the reason for this merry-go-round of pelvic pain was caused by bladder infections. I was given antibiotics and sent on my way. To this day I do not recall any physician sending my urine to a lab for a culture. I didn’t know to ask if they checked if I had a true infection. All I wanted was not to hurt.

In 1993 vulvar pain came into my life and the specialist whose answer for me was urethral dilations. I think it made the pain worse. But desperate times call for desperate measures, and that was me.

About eight years ago came the revelation that if all the doctors I had seen over the years in my search for the cause of my pelvic and vulvar pain had not been able to give me an answer as to why; chances were they just didn’t know.

One physician told me, “Oh, you don’t want that (IC), get rid of it,” I knew it was up to me to find out what was pushing my life in such a negative direction. I had to keep looking.

Then a miracle, a kidney stones showed up on an x-ray. Those tiny stones were tangible evidence that could be dealt with by an urologist. In all those doctor visits the specialty of urology never came up. I was diagnosed with IC in 1999 because of scoping my bladder for those kidney stones. Finally I could put a definite name to the reason for my pelvic pain. The knowledge that I had IC took me from thinking I was neurotic and dismissing my pain, to appreciating that I had a lot to learn.

When my seventeen-year-old daughter was diagnosed with IC and six months later my five-year-old son was also formally diagnosed, I remembered their infant years. Of my five children my oldest daughter and youngest son were the two that always had wet diapers and potty training was a nightmare. With the diagnosis of IC so much of our lives now made sense.

Since we discovered that we shared the symptom patterns of IC, I knew they were watching how I handled my own recovery. I was now a role model for how to handle a chronic disease. I had to learn how to help them by educating myself.

I knew I needed to gather as much information as possible so that I could begin to sort through what symptom relief solutions work for me and might help my children. One of the best decisions I made was to attend the Interstitial Cystitis Associations (ICA) seminar in Florida followed by an ICA convention in Minnesota. I began to build my library of IC focused books. And in 2001, I found the IC support group. I began to attend and become involved in both learning and sharing information about the syndrome that is IC. I was able to take greater control with the personal assessment of IC information and how it related to our lives.

Becoming informed makes all the difference, as illustrated by an event in my daughter’s life before I was aware that children could have IC. When my daughter was in the fifth grade the class project was to learn how to budget money. Students were to pay rent for their school desk as a part of their expenses; also each restroom visit had a fee. Because of her urinary frequency she ran out of money and lost her desk and had to sit on the floor. This hurtful event was caused by the lack of information and understanding. On the reverse side, my young son has returned to school each year to teachers who I have informed about his special needs. A night and day difference in the school experience because of my education of what to expect with his IC symptoms.

My personal food and allergy discoveries are reflected in both my children. For me the allergic response to the antibiotic tetracycline and sulfa medication is throat swelling. This throat tightening and inability to breathe also happens to my daughter when the vegetable, asparagus, even touches her plate. I vividly remember a call to the paramedics that was aided with my giving her the antihistamine, Benadryl. I have learned about genetic links from my children.

For us, definitely, preservatives and monosodium glutamate (MSG) cause bladder and pelvic distress. As an example, I eat all fresh vegetables and fruit with the exception of plums and walnuts; I must be sensitive to these two foods because my throat gets sore.

About five years ago I became a patient advocate in the urology office IC Clinic. I have never smoke, had any coffee, tea with caffeine, or alcohol, including wine or beer, as part of my life. After discussions with many IC patients I recognize and appreciate how difficult it is to modify these choices even when you know the rationale is to make BPS/IC symptoms less likely to occur.

I have listened to patient statements that their drink choices make no difference in their IC symptoms. I think they do. I have diabetes and I am controlled with oral medication and diet. I can drink the cola brand of Diet Coke with no bladder reaction, but if I drink the brand Diet Pepsi pelvic pain comes. I discovered that Pepsi has potassium and Diet Coke does not and that must make the difference in reactions for me. Caffeine acts on me, as is reported by most, with more trips to void. I’m fortunate and have ducked the pelvic pain bullet with this one. Directly after drinking a cola I drink sixteen ounces of spring water of the southern California brands, Arrowhead, Crystal Geyer or the brand called Evian, because it has minerals; this mean a lower acid content (pH) than the reverse osmosis products such as Aquafina, Dasani, or any bottled water labeled “drinking.”

For most of the week we have nine dietary plans to consider. As an example I deal with diabetes and the fresh fruits and vegetables balance well with the IC. A low acid diet, limiting dyes, preservative, and going mainly organic for our choices takes the entire family’s health into account. Due to my diabetes, my need is to reduce quantity of the starch items such as rice and potatoes, which are the corner stone of the IC diet.

I am a believer that our food is the major source of the chemicals we put in our bodies. What we choose to eat and drink makes a huge difference in maintaining good health. When I prepare the meals I always consider our needed dietary adjustments. I cook mostly using fresh not preserved. I have often said that before a food is dismissed from the diet the source, i.e. organic, the way it is prepared, i.e. baked tomatoes instead of raw, and amount of consumed should be considered before it is thrown out of a diet as not being tolerated.

The extra money spent on purchasing organic foods, Bristol Farms and time finding good sources of prepared meals, such as Trader Joes has been worth it because it is less time and money spent fighting IC flares and doctor visits.

When it comes to restaurants I find that more and more of the chains are learning that customers want choices based on being nutritious rather than taste alone. Again we are fortunate to have a family chain of “In and Out Burger.” That keeps it menus simple and the food choices freshly made.

I know my allergy ranges from medications such as tetracycline and all sulfa-based drugs. I know that monosodium glutamate (MSG) has the same affect on me as eating walnuts; my throat gets sore. I have learned to read my body’s messages.

My main medication for IC remains Elmiron. I now take 200mg a day, one in the morning and one in the evening. Zyrtec is the antihistamine that I take before bedtime to keep the environmental allergies quieted down. I do not know what studies have been done but for me allergies are a big part of my bladder and vulvar pain control. Calcium citrate with D is part of my health regimen. My main reason for the addition of calcium citrate to my medication list is the suggestion of the Vulvar Pain organization; for me this combination works well.

When you have five children, I did my share of lifting. Along my educational way I discovered that asking for help with the heavy lifting was smart. We all have to learn where our boundaries are. As other examples to keep me fit; running and aerobics have been replaced with walking and aerobics in a pool. Low impact has become more than a phrase to me.

There is much to be said for the healing act of sleeping. My bedtime is between ten and eleven o’clock, and because I have learned to live the changes that needed to made, I no longer take my middle of the night walks to the bathroom. Sleeping through to six thirty in the morning is the blessing of my much-improved life.

A large part of my support has been my husband. There were long rough patches when I didn’t understand why my pelvic region and vulva were so painful and the frustration spilled over into our marriage. We need to pull together because in our house we are a large family and it is multigenerational. For the past several years and for the foreseeable future we have a busy household with my mother-in-law and father-in-law, my oldest daughter, son-in-law, their new baby, and our two sons. My aim was to educate most of my family members. They need to understand the reasons for the choices we have to make because of the need to control IC symptoms, in addition to multiple other individual dietary needs.

Difficult times came for me when I tried to explain the nature of IC with my attempts to share with my mother-in-law; how we needed to work together so that IC was taken into account. Most of my family members understand that any chronic condition means ongoing up keep, IC is no different, in my opinion. My mother-in-law is in her mid-seventies and does not open her mind to many changes. This reminds me of the majority of the physicians I have asked for help over the years. In my experience, too many times a physician would not admit to not understanding the reason for my distress and deny there was a problem; perhaps my mother-in-law’s outlook is the same. I have decided you cannot win them all.

I have come a long way from wondering where to turn for help. The anger caused by pain and frustration has changed into self-reliance to make decisions based on solid information. Life has its trials, errors, and hard times; I encourage you to find the support you need so that you can again find joy.

What I Think:

All childhood repetitive experiences are not always “normal.” My parents made great allowances to deal with my frequent bathroom stops.

If sexual intercourse is painful, there is a problem.

If you have bladder infection symptoms, such as increased urge, frequency, burning or pain or urination, and even a tiny amount of blood is found in your urine, a sample needs to be sent to the lab to check for bacteria. Differences in dealing with an IC flare and Urinary tract Infection (UTI) must be taken in to account.

Vulvar pain and IC pain are when nerves are hyper-activated.

Be prepared to search for a physician who understands IC. This situation of lack of awareness is improving, but there is still a less than perfect system of identification and treatment.

The Interstitial Cystitis Association (ICA) has a wealth of good information. It is up to the individual to decide when the information can guide them.

I think that IC can be passed from generation to generation, just like sensitivities and allergies.

Diet changes are a key to IC control. Think organic and homegrown and homemade.

Pharmaceutical medication in our treatment should not be discounted just as the homeopathic or herbal methods should not be embraced without the appreciation that they are all chemicals.

Take your body’s message seriously. Ask for help, and learn to say no.